the road taken

Last week I went out of town during the first light snow of the season. Before leaving, I checked the alternative routes, of which there were at least three. I chose the fastest, but also the least travelled.

On a previous trip, this journey took almost two hours. Going this time, it clocked in at 1 hour 38 minutes, with the bonus of pretty views and almost no other cars in sight.

Still. I should have noticed.

One road, called CR 52, climbed and climbed and, for most of its ten miles, was receiving a light blanket of snow. Elsewhere it was only rain, or no precipitation at all.

The next morning, ready to return home, the streets outside the inn were covered with a couple of inches of snow, and more falling. A postcard scene, and I didn't think twice. I could have chosen only state highways which, in this part of the world, are usually plowed and salted and safe. This would have added about 20 minutes to the trip.

But why not go the same way I came? It was so pretty! And fast, too.

All went well until CR 52. But I didn't think of turning back; I had come too far, I know how to drive in snow, and --- an adventure. And a car that tracked sure. The few other vehicles I met were either crawling, or pulled over to the side of the road.

When I reached the state highway about 30 minutes later, the road was clean and the sun was breaking through.

I checked the time when I arrived home: 1 hour 40 minutes.

A good choice, after all.

But next time, if it's snowing, I won't be on CR 52.

Candace

waves on an ocean

"What we call life...consists of single moments, which arise, dissolve, and arise again, like waves on an ocean"-- The Dzogchen Ponlop Rinpoche

As a child I lived near an ocean and I loved body-surfing the waves into shore. The highest were the best; in their current all I could do was "just go" and let myself be churned onto the beach. Those moments held everything: Fear tossed with abandon mixed with awe. And I would go back for another ride and another and another not because I was stupid (well, maybe) but because I was vaguely aware of something else: This land-locked human was dissolving into something I could not understand, but what a relief it was.

Where we are: Rich is experiencing a significant amount of pain in his neck, arm, and two of his fingers. He considers the possibility that "this is the beginning of the end." A big wave, again, and a reminder to let the fear melt away. But I will try to keep the wildness and wonder.

Candace

Training

At my favorite coffee spot a sign occasionally appears above one of the cash registers: "Training: Please Be Patient." I am tempted to borrow and wear it --- and ask for a few extras.

In retrospect, I achieved mastery of every "job" only after I had moved on. I don't think I ever quite managed childhood, or puberty, or college, or my first career, or my second...you get the idea.

Until it was over, and then I realized two things.

First, regret: If I only knew what I now know, how easy it would have been.

Second, acceptance: I know now that I never could have known.

Training is not a place from which we move on, but a place where we learn to be comfortable. And learn patience. For me, and with you, and all of the days.

Candace

revolving door

Yesterday Rich had another MRI to check on progress of the tumor. At the entrance to the imaging center are two doors. One is the simple open-and-walk-through type. But this is not the preferred entrance.

A sign says, "Please Use the Revolving Door."

So we do, again and again. It's not as if we don't have a choice. It's not as if anyone is watching.

Habit? Obedience? Possibility that this may be the better option?

Chordoma is not something that can be walked through. There's the experimental drug, its monitoring, the rhythm of tests, trips to New York, meeting with doctors, awaiting the results. Round and round and round. This is about management, not curing.

Still.

Why not walk through? Each turn is new, even if unwished. We can be stuck in the emotion, but not the moment.

So.

Rich's tumor has not grown. He will continue as a test ferret on the Sutent (ferrets being the only other species known to support chordomas). We will contine our trips to New York, although now Rich gets a "leave" for four weeks. He will continue managing loss of use of his arm, treating the elevated blood pressure and foot blisters that are some of the side effects.

So it still goes, round and through.

Candace

pressure, blood and others

Rich's blood pressure, not unexpectedly, has moved from his normal low to too-high. This is a "side effect" of Sutent, the experimental-for-chordoma drug.

He is still waiting for the "front effect." It doesn't seem to be working. What is working is pressure on his feet, causing painful blisters; sour stomach, causing fear of anything but bland; hope, causing disappointment.

He will not take more Sutent until he gets in touch with the physician's office, probably on Tuesday.

So the pressure is still on: A limited time to stop the tumor before it hits the spinal cord. Surgery is the next step, but it will cause, at minimum, total loss of usage of his right arm.

Maybe I should explore more alternatives, Rich says. Most do far less damage than pills and knives, and some even comfort. But what if nothing works?

Is there a reason for all of this? Rich asks as we fall into bed.

No.

And we sleep, long and deep.

Candace

alive!

I don't think it's me. We may be passionate about politics or sports or NASCAR, but when we ask ourselves what really matters in our wooly-sized worlds...

It's coming up on three years since Rich's surgery. I remember the day after, awake for most of the previous 48 hours, happily stumbling into my favorite NYC pastry shop. Most tables are filled, people absorbed in their cafe au laits, newspapers, laptops.

In front of me is a gaunt young man in black.

"Two coffees, large," he says.

"A long night?" I cheerfully ask.

"Bush won."

Oh, right. Yesterday was the presidential election, and I suppose the absentee ballots Rich and I filled out in October didn't make the difference.

But, I want to shout: Who cares if my candidate lost? My guy won! He is alive! Why isn't everyone celebrating?

Perhaps because my world is so small. Or maybe just the right size.

Candace

watch wooly walk

"Do you think he's dead?" Rich asks.

"No, just resting," I say.

He --- or she, I'm sorry I don't know the difference in this species --- is a wooly catepillar, a furry black-and-brown black-eyed pinky-sized autumn visitor. This Sunday morning he is camped out on our deck, crawling from one board to another, hesitating when he comes to a small separation between the boards before charging across.

Does he have a goal? We expect it's the grass, where he will be safer from predators and find some food. So, we root for him to conquer the chasms between the boards, urge him on as he wriggles under a stray blade of grass that's twice his size, and bravely ignores our skyscraper shadows.

Sometimes, he rests. Moving forward is an act of courage, and so rest, a temporary form of death, is a good strategy. We humans can clearly see where Wooly should be going. Why are you spending so much energy going south! You will only bang your head! That's it...turn around...good!

Rest, crossing chasms, not seeing if we're going in the right direction: That's our life this autumn.

We come back, about six hours later, and find Wooly cozily tucked away, at the edge of the grass and deck. A safe spot. Did he know he would end up here, or is it pure chance?

Either way, it will work.

A good week to all,
Candace

chordoma dance

I never explained the title of this blog. For a good reason. It is a "tofu" title; that is, it easily absorbs the thoughts and emotions of the moment.

At this moment, then. Dance as a series of movements...that is, a form of transport. Not as a way of physically getting from one place to another; to dance is not the same as to drive a car or fly in a plane. If I want to go from New York to London, a tango won't do.

We want Rich's chordoma to go far away. We will buy the ticket -- first class, why not -- a bottle of champagne, and almost anything the chordoma wants for future happiness. Except, of course, Rich's body.

But there is another meaning to "transport" that's not dependent upon chordoma's acceptance of our most generous offer. It is to take us to another place, another time, another way of living.

We're trying.

Candace

going backwards!

Going backwards...a good thing! Rich's neurosurgeon phoned yesterday with just-arrived MRI scan, and confirmed what Rich is feeling: The tumor is showing no new growth, and its "density" (I admit I'm not quite sure what this fully means) is reduced. Although eating with chopsticks remains a challenge, Rich's range of motion is not getting worse, and at times seems a bit improved. So -- the 'Sutent' will continue, and we return to NYC in 10 days for the next follow-up.

Candace

following that damn blaze

A year or two ago, I read an article profiling hikers who had just completed the Appalachian Trail, a trek of five or six months of through hiking from Georgia to Maine. Some had specific plans and responsibilities to which they were returning; others were not sure of their next step. Just about all, though, agreed with the words of one hiker: "Life was so simple on the trail. All I had to do was put one foot in front of the other, and follow that damn blaze."

I think this sums up all of the great teachings. This is a good life.

Best wishes to all,
Candace

snafu.again

To turn to "modern medicine," one must assume that its tools are worth the pain. Poison and cutting, these are the pillars of Western healing, and sadly Rich has needed both. And one more, of course: The Perpetual Snafu.

The latest is this. Rich has an MRI at the local hospital, needed because his right arm continues to lose function and the surgeon has to know if it's time to cut again. Snafu begins with the primary care physician requesting an MRI for the wrong body part. It continues with the hospital sending the info to the wrong physician. Rich catches both of these. He requests that the CD be mailed immediately, there's no point in waiting for the local radiologist's report. This error he did not catch until today. The CD waited for the report we didn't need. The surgeon doesn't have it. It is somewhere, but nowhere of use. Maybe it will arrive by the end of the week.

Candace

bare naked bulb

The light bulb in our "reading room" died. Our new house has high ceilings, so Rich goes to the shed, retrieves the ladder, climbs. For his six-feet-plus height, this is an easy reach. Except he can't lift his right arm. So he unscrews the square glass cover with his left arm, hands it off to me, and removes two bulbs.

Carrying a fresh pair of sixty-watters into the room, he climbs again and easily screws in the bulbs. Having washed it clean, I hand the cover up to him.

No way. You can't do this with one arm.

I try. I'm fearful of ladders, but I try. For my five-feet-five height, this isn't working. I can't go high enough.

No matter, I say. We can live with a bare bulb.

You know what, Rich says. I didn't have to remove the cover at all. I could have taken off the bulbs without doing that.

Ah, well, too late. Do you want tea?

I fill the kettle, pour milk into the mugs, and we read the newspaper and talk about a racehorse named Maimonides.

Candace

bag balm

A correction from the last posting: Rich is now using "Bag Balm," not "Udder Balm." That's another, though similiar, product.

Go to the website, and the categories for use of Bag Balm are cows, horses, and pets. I'm not sure where Rich fits into this, although this morning he left me a note saying that his right "hoof" was somewhat painful. Last night he was snorting a bit, too.

But this tin of lanolin also heals those lacking hooves or paws; referring to testimonials from the website, it is a favorite lotion for those "on a long journey." It has, for example, accompanied explorers to the North Pole, protecting their skin from the ravages of bitter cold.

On this expedition, bag balm is doing a nice job of controlling "hand and foot syndrome" (maybe by transforming it into "paw and hoof syndrome"?) with Rich not having too much discomfort from blistering feet, one of Sutent's side effects. And, as a bonus, his skin now has the silky suppleness of a fine leather coat.

Thursday we trot off to New York. I'll be in touch.

Candace

a truckload of dung

Buddhist monk Ajahn Brahm is the author of a book of 108 stories titled, "Who Ordered this Truckload of Dung?" Haven't read the book, but love the title.

In the past few weeks, the loads have been coming steadily.

"Did you order this?" Rich asks, as the day ends with another fresh delivery.

"No, did you?" I ask.

But the good news is: The pile is getting smaller. Or -- we are getting bigger shovels and stronger backs.

Where we are: Day 9 of Rich's "Sutent" trial (or trail, equally descriptive). Thus far, the side effects are predictable. Mouth sores, mild headache, foot reddening/blistering. Baking soda rinses help with the mouth issues, and udder balm with the feet. (For urban readers: udder balm is exactly as it sounds. For cows. But works for human parts, too).

Next Thursday and Friday we return to NYC to check in at Sloan Kettering. Also next week, Rich has an MRI scan -- pending insurance authorization -- to check on the progress of the chordoma.

Rich is still going to work. We are still drinking wine at dinner. We are still shoveling.

A good weekend to all,
Candace

eulogy for compost

Our former house is almost sold; closing is on Friday. Today Rich and I went to the waste station and emptied remnants from the garage: old wet rugs, broken-down furniture, one of my graduation robes.

All that's left of us is a compost bin that never would pass inspection by today's standards. Now we can buy "earth machines" and fancy rotating drums and consult compost mavens, but when Rich built this primitive square bin in the early 1980s it was profoundly unscientific. Into it went food and garden scraps, topped occasionally by spring grass clippings and autumn leaves. A lot of it was eaten by acrobatic rodents. Some of it -- tablespoonfuls, not much more -- actually turned into soft, sweet-smelling, nutrient-rich compost. After twenty or so years, this wasn't much to brag about.

I hope my life -- our lives -- have yielded more, but I wonder. Random piles of actions and thoughts and fears, nibbled around the edges...if I paid more attention, maybe I could have been one the folks at the cooperative extension demonstrations, proudly standing next to a barrel full of fertile soil.

Or maybe not. Maybe feeding hungry rodents is the best I can do.

Candace

secaucus is not our destination

Dear Friends,

Rich is now resting from our trip to New York City. I had the first sleep shift, just awaking from a two-hour nap.

This is what happened yesterday.

Weeping rain, all morning. Sometimes, very heavy. We board a morning train from Salisbury Mills to Penn Station, a 1 hour 20 minute trip. We watch the rain, hold hands, talk. We wish we had done more of this.

We call a friend, and take the subway to meet her uptown. A wonderful lunch that became our dinner, too. Plates of pasta and glasses of wine and, mostly, hope.

Two buses later, crosstown and downtown, the rain stopped, amazingly cool New York weather blowing in. We arrive at the Laurence Rockefeller Pavilion, the midtown satellite of Memorial Sloan Kettering. A lobby of the a $600-a-night hotel couldn't be finer. The concierge, wearing tie and a smile --- no pink-coated volunteer here --- greets us. Fifth floor, we're told.

We wait. Rich is weighed, measured, his temperature taken.

We wait.

We are escorted into the inner sanctum where the doctor whom we have never met will, we hope, offer us a bag of the experimental pills that will knock back Rich's growth.

We wait.

A young woman, friendly and enthusiastic, enters. She wants to tape the conversation Rich will have with the Fellow, the doctor's assistant. Okay, he says. He signs a form. He offers an office at Cornell that can help with her project. She is brimming gratitude.

We wait.

The Fellow arrives. About twenty minutes of questions Rich has answered countless times before. He is examined. How many fingers do you see? Are you in pain when I touch your back, neck, armpits, groin?

We wait.

Two hours after arriving, the doctor walks in. With a wad of forms, but no pills. Sign these, he says. You can read them later. Rich agrees to cooperate with this experiment, to keep a daily log, and to return to New York in a week to pick up the pills.

What? we both say.

Okay, okay, maybe we can work something out, the doctor agrees. You need blood tests before we begin. An EKG, too. Sutent can cause heart failure. Why didn't you tell me this before, Rich says. I could have done these test back home. Now we're losing time.

I hope this helps with your symptoms, the doctor says.

I don't want help with "symptoms," Rich says. I want help so I'm not paralyzed. I want help so I don't die.

Forever a scientist, Rich asks questions that can't be answered. He's a guinea pig --- actually, a ferret, they apparently are the only other animals that support chordomas --- and we leave with scrips for tests and daily logs and reminders to return every two weeks.

Everyone, even the doctor for whom Rich is the ferret, is nice.

But while nice is nice, I don't care about nice. I care about Rich dying.

We take the subway back to Penn Station. It's late. We ate, we realize, days ago. Because of his current meds, he gets shaky when he doesn't eat. We get sandwiches at Penn Station.

We wait.

The train comes. We change at Secaucus, the timetable says. But this is the first stop, and on the crowded train the conductor doesn't collect our tickets before we disembark.

We could have gone to Secaucus for free, I say.

No, Rich says. He grew up in the next town. He knows. Secaucus, he says, is no one's destination.

When we get on the train for the long part of the trip, the conductor takes our ticket. For the long trip, everyone pays.

Candace

55 Miles North

Dear Friends,

In a couple of hours we will be leaving for New York. Not quite New York, but 55 miles north, where we will be staying at a bed and breakfast, and then taking a train into the city for Rich's appointment on Friday.

The proprietors of the B&B have a question on their reservation form. "Why are you visiting?" The choices: Business. Pleasure. Honeymoon. I leave this blank.

Rich is ready. He has his notes, he has done the research. He will be the third person to take "Sutent" for chordoma treatment. We don't know if it will reduce the tumor. We don't know how sick he will be from the drug. We don't know if and when surgery will happen. We don't know how fast the tumor will move.

"What will become of me?" Rich wondered last night. "What will become of you?"

To this, I have no answer. I want other options.

Candace

collateral damage

Dear Friends,

Last night I didn't sleep much. Maybe it's the heat (we're in the Dog Days here). Maybe it's re-writing my book (I'm at the hump stage, where everything I've written in the past year seems absurd). Or, maybe, it's the effect of Rich's steroids which the 1,000 word manifesto accompanying the drug warns: "Can produce insomnia."

Rich slept fine.

"Collateral damage," he said this morning. That's not included with prescriptions. The interdependence of our lives can't be quantified. If my connection with my morning cup of "English Breakfast" tea binds me to strangers in East Africa and Sri Lanka and India -- what of the one breathing beside me?

Love,
Candace

a new day

Dear Friends,

Rich is showing significant improvement since we returned two days ago from New York. Possible reasons: Steroids, acupuncture, and my cooking. Well, two out of three. The first two are designed to reduce swelling along the nerves affected by the chordoma, and already they seem to be having impressive impact. He has mowed the lawn, filled some cracks in the concrete walkway, and otherwise engaged in arm motions not possible a few days ago. While driving our stick shift cars, he cannot move his arm in the required direction to engage reverse gear -- but, hey, that's not the direction we plan on going.

Thanks to all for your e-mails and calls and hugs, virtual and in-person. You're our lifeline.

Love,
Candace

a new home

Dear Friends,

We moved into our new home a bit over two months ago. Since then, we have been asked: "When's the housewarming?" In September, I thought. After our other home is sold, after we buy some furnishings and unpack here, after the weather cools off.

But Rich's chordoma --- a little thing, really --- has shifted our plans. Here's where we are.

The yearly scan in July at Mass General revealed a growth in the tumor in his cervical spine. Thus far, the effect is rapid weakening of his right arm, but very little pain. The lack of pain is bewildering to his surgeon at Sloan Kettering, and in this case "no pain" may not be a good thing. Further radiation is not an option now, as the tumor apparently is not sensitive to this form of attack. Surgery, while still possible, would almost certainly destroy use of his arm. And time is important, too, as the symptoms increase almost daily, and as the chordoma works its way into the spine itself.

So, at this moment, we planning to return to Sloan Kettering next Friday for Rich to begin a highly experimental chemotherapy drug, "Sutent," that is primarily used for advanced renal cancer. Using it for chordoma is a shot in the dark, but one that we hope will encourage the chordoma to gracefully fade away, and find a new home.

Candace